Help / FAQ


Louise Cook

2016-05-19 16:55

Lindsey's story

I wasn't diagnosed with back problems until I was just into my 50s. My original diagnosis was spondylolisthesis and the medical people were amazed that I had not been diagnosed before. They said that I would have had the problem with my spine since I was a child or young teenager, and had obtained a stress fracture on both 'pars' on my vertebrae, which had led to a slip of the L4 vertebra over the L5. They were particularly surprised that I had carried 3 pregnancies and yet had still not been diagnosed (apparently the weight of a pregnant bump is known to pull the slipped vertebra further and cause very painful nerve compression). They asked if I had had trouble with my back when I was pregnant and I had, with awful sciatica too. I had assumed that it was normal because books about pregnancy mentioned that back pain was common.

It wasn't until a weekend in Madrid, when my back pain meant that I could only walk for about 10 minutes before I needed to sit down, that I thought there must be something wrong with my back and went to see the GP when we got home. Looking back, I have always had some back pain and wasn't able to stand for long before needing to sit. As a teenager I would sit on the ground when there weren't seats available. I just thought that this was me and never considered that there could be something wrong with my spine.

After diagnosis, which was made through an x-ray, I had an MRI scan. Doctors were shocked at how far my spine had slipped and was starting to tip over; the doctor told me that she didn't understand how I was managing to walk about. She wanted to refer me to a spine surgeon but I declined saying that I didn't want a spinal fusion. I asked her to tell me anything else that would help me and I would do it. For about 2 years I exercised, walked, lost weight, changed my diet, drank lots of water and saw a chiropractor in an attempt to get rid of the pain and avoid spine surgery. However, the pain continued to get worse, and eventually the chiropractor told me he would understand if I decided to stop visiting him.

My life shrank in what I could do and I had to lie down frequently during the day due to the lower back pain and terrible sciatica which spread to both legs and would have me in tears some days. I went back to see the lady who had diagnosed me, and she convinced me to see a surgeon about a spinal fusion.

When he examined my spine and MRI scan, the surgeon told me that I would not be able to avoid surgery any longer. He said that if I did I would end up in a wheelchair, eventually incontinent, and where at that time I could get rid of the pain when I lay down the time would come when nothing would help the pain. I had a spinal fusion of L4/5 three weeks later! This was in March 2010.

My recovery wasn't as bad as I had read and expected. The nurses and physiotherapist were amazed at how well I did and told me they thought it was partly because I had been in so much pain before the operation and partly because I had been exercising so much to try to avoid the surgery. I walked the day after surgery without a Zimmer-frame or even a stick.

By the time I was diagnosed with the lumbar spondylolisthesis I was also having symptoms in my right hand and arm with some pain in my neck. It often woke me at night. My GP referred me to a neurosurgeon and an MRI revealed that I had a lot of degeneration in my neck at 4 levels with the two higher levels compressing and flattening the cord from the front and the back. There was no spinal fluid around the cord at all. They also said I had a congenitally narrow spinal canal.

I was kept under 'watching and waiting' by a consultant for over two years. It was only after seeking a second opinion that I finally had ACDF (anterior cervical discectomy and fusion) surgery in November 2012 to get the compression off the cord and to stop further damage to it. Afterwards, my symptoms are still pretty much the same although I did get some relief from the awful headaches that I was suffering with as a result of my neck.

I am now 60 and have been suffering with back pain that I would say started to really affect my life since 2008. I have a lot of arthritis throughout my spine, and now also have arthritis in both my knees, and have been told I have permanent nerve damage in my neck. My lumbar spine is starting to give me problems again (although not nearly as bad as just before my lumbar fusion), and I have been told that I may need another surgery on my neck, from the back to open up the nerve roots. There are also three levels of my thoracic spine that are compressing nerves.

At present I take 75mg of Nortriptyline each evening for the nerve pain (I did wean myself off the Nortriptyline to see if it was making any difference to my nerve pain. It definitely was and I went back onto it!) and Naproxen. I also take Lansoprazole to protect my stomach from the effects of the Naproxen.

I see a physiotherapist privately once or twice a month and he does mobilisation on my neck and works on trigger points in my neck, mid and lower back muscles. I also do Pilates. I find that this helps me a lot. Even when I feel very stiff and sore before the class, I always feel better afterwards. I know that moving my joints helps them. I also walk just under 2 miles almost every day (even in the rain!) and know that this helps me too.

I signed up to the Cloudy study because I am interested to see if there is a connection between my pain and the weather. I have never felt that there was a connection for me until a friend, who also has very bad arthritis, and I were both having a really bad pain day one day. I had never seen her walk so badly. It was a very cloudy, rainy day and that made me wonder if there was something in it. At first it appeared that there was a connection when I looked at the graphs of my pain compared with the weather. However, there have been times when there doesn't seem to be a connection. I think that my pain is affected by various things and possibly the weather is one of them. Stormy and very cloudy weather seems to make a difference. Certainly on clear, sunny days, I often feel pretty good!